Abstract
Using the phenomenological approach of Van Manen, this study explored the lived experience of receiving a diagnosis of cystic fibrosis as an adult. Ten essential themes were generated from the stories of 36 participants: Awareness of Death, Change, Difference, Distraction, Family Indifference, Intrusion, Isolation, Normalizing, Time, and Uncertainty. Themes associated with gender, illness severity, and medical care were also developed. Although themes were similar to those in the chronic illness literature, late-diagnosis of CF was found to be a unique experience. Participants sought personal relationships with caregivers and educational materials targeted to their needs. Implications for social work are discussed.
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